How I Self-Diagnosed My Lipedema
And research is working on finding a way to diagnose beyond a clinical assessment.
Hi Everyone,
I’m here at the FDRS conference, and meeting a lot of wonderful women! I came solo, and as an introvert, I struggle to put myself out there to strangers. I don’t like that about myself, but it’s who I am. However, everyone here is so inviting and chatty. I met two new friends who’ve been here before and took me under their wing right when I was going down to the mixer to kick off the weekend. Shout out to Susan and Stephanie, you two are awesome!
While I’ve been here, a handful of people have asked me how I got diagnosed. I’ve written about this before, but it’s been a while.
In short, I diagnosed myself with Lipedema. At least that was my first step.
Many people have asked me if they can self-diagnose their Lipedema. My answer is enthusiastically “YES”! But on a deeper level, it’s important to say that you can read your body and conclude that what you’re going through isn’t “normal” no matter how many doctors tell you otherwise.
I started going through menopause over six years ago and started gaining weight, over fifty pounds overall. I tried all types of diets without success. This went on for over 3 years, and my weight slowly started creeping up. I'm a writer on Medium and actually wrote an entire article about diagnosis here. At the time, I was reading a popular writer's blog on her Lipedema and trying to get surgery. She was crowdfunding because she had no insurance. I decided to write an article about the medical industry for her. But I’d never heard of Lipedema.
I started searching online about this condition. At the time there were very few articles on Lipedema and virtually no social media. But, as I dug further and further, I realized that I had all the signs and symptoms of Lipedema. In short, I self-diagnosed my Lipedema.
Knowing this condition was not well known, I was going to have a hard time getting treatment. I also knew if I wanted treatment, I needed a diagnosis. I started looking for a Lipedema specialist but found there were none in my state. This is also when I learned the trouble women have getting Lipedema diagnosis and treatment, especially surgery.
I found Dr. Karen Herbst through online research. I tracked her down from Arizona to California. I don't live in California, but I called her office and made an appointment. Her office told me she didn't do online initial appointments for patients in my state (dang licensing laws), so I had to see her in person. At the time, she worked in the office of Dr. Jamie Schwartz, so I also made an appointment with him for a surgical consult.
I bought an airline ticket to Los Angeles and booked an overnight hotel near their office.
When the day came, I flew down to L.A. and showed up for my appointment at 8 am. She spent a good couple of hours with me, taking regular photos, thermal photos, measuring my body, and finally told me that I had Type III, Stage II Lipedema. I also had the beginning of Type IV Lipedema affecting my arms.
Right after my appointment with her, Dr. Schwartz saw me. He pressed on the areas around my thighs, and that’s when I realized my Lipedema was especially painful to the touch. I don’t know why I hadn’t noticed it before. My only explanation is that I live with chronic pain and am sore all over my body all the time. Dr. Schwartz proposed three separate surgeries for me (I ended up only having to do two surgeries, though).
That diagnosis was on September 21, 2021, and is how I started this whole Lipedema journey, from diagnosis to liposuction surgery and helping others get insurance preauthorization for surgery, too.
That was over 2 1/2 years ago. So much has progressed with Lipedema research and treatment. Here at the conference, I’m learning about how Lipedema organizations are funding research to identify ways of diagnosis beyond clinical assessment. Finding hard clinical diagnostics would be a breakthrough for us.
As I learn more at this conference, I can pass the information along to you. I just want to say that this is promising!
Take care,
Michelle